EUROPLAN National Conferences

 

The EUROPLAN National Conferences are the tool designed to promote the adoption and implementation of national plans or strategies for rare diseases in European countries based on the Recommendation of the EU Council on an action in the field of rare diseases of 8 June 2009, as well as to facilitate the integration of EU rare disease policies and recommendations into the national health and social systems.

EUROPLAN National Conferences are jointly organised in each country by a National Alliance of rare disease patient organisations and EURORDIS.

These conferences were co-funded by the European Commission within first the EUROPLAN project (2008 – 2011) and thereafter, within the EUCERD Joint Action (2012 – 2015) and RD-ACTION (2015 – 2018).

Impact of EUROPLAN National Conferences

In 2009, only five EU Member States had adopted a national rare disease plan (Bulgaria, France, Greece, Portugal and Spain).

Between 2010 and 2018, altogether 59 EUROPLAN National Conferences took place in 25 EU Member States, as well as in Georgia, Macedonia, Russia, Serbia and Ukraine. Some National Alliances organised several EUROPLAN conferences in their country.

As a result, by the end of 2018, 25 EU Member States (plus Serbia) had put in place a national plan or strategy for rare diseases. Malta, Poland and Sweden are still discussing the adoption of a strategy or plan.

The outcomes of these conferences have undoubtedly contributed to the adoption of national plans or strategies in many European countries.

EUROPLAN National Conferences are instrumental in the creation, adoption and implementation of national rare disease plans

The success of the EUROPLAN National Conferences

The strength of a EUROPLAN national conference lies in its shared philosophy and format. The conferences are:

Patient-led - they are organised by national Rare Disease Alliances in conjunction with EURORDIS.

Multi-stakeholder - national authorities, patients, carers, healthcare professionals, academia, industry, social workers, insurers all attend to exchange on their experiences and perspectives.

Integrated between European and national levels - participants use the conferences as an opportunity to assess the integration of EU regulations, policies and recommendations into national health and social systems.

Exhaustive - Discuss all strategic areas of a national plan/ strategy, including governance and also rare disease healthcare and research.

Page created: 12/02/2019
Page last updated: 15/02/2019
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases